To start I am halfway through my PT for the neck fusion from March. Met with the NS and he said will discuss having the decompression at our 5-10-12 office visit. Here is my multifaceted problem with this visit and upcoming events. I thing I have asked this before but hey I can't remember but the situation is when he looks at the brain MRI surgery is not needed cause my herniation is too small but when he looks at the CINE MRI surgery s a great option. HE has copies of both MRI's. Any advice on how to sway his choice using the CINE for a basis instead of the brain MRI on deciding to go forth with surgery? Since the fusion there has not been a relief of symptoms and I did inform him of that at our last visit and that is when he informed me we will discuss the decompression at our next visit.
Next though, I just got out of the hospital on Sunday after having another bout of pneumonia (2 in under a month, last one was real bad with spitting up blood; sorry to be gross but) due to this I am seeing my pulmonologist and seeing if I should wait to have surgery or see if he pneumonia is interstitial lung disease which they said it might be when I was at the hospital? I want to try to keep a time schedule of having the surgery after the 4th of July which brings in the next factor.
My SSDI lawyer group called me at PT this morning and told me that I have my appeal hearing on August 9th at 9:20 in the morning. SO if I win I lose my good insurance ( I am not sure how good Medicare/Medicaid [whatever insurance you get with SSDI] is)that will cover 90% of all cost and the remaining 10% will be forgiven under charity care that I am eligible for under the hospital guidelines. With that be enough time to be somewhat coherent and recovered at the appeal review for SSDI if I still do my surgery after July 4?
Any tips for handling the appeal, even though I have lawyers and representatives working for me and with me? Surgery advice and guidelines? Any information.
I know I have rambled and some of it may not make any sense, but I am confused?
Sorry you are going through so much..now the lung issue..keep us posted on that..is the lung doctor planning on more testing in the near future????
To me, anyway, from what you wrote, it sounds like your NS is leaning towards decompression since he said he wanted to talk about on your next visit.
Once you get approved for SSDI you do NOT get Medicare for 2 years..this is a shame..one is too sick to work , however, the gov't makes the patient have to go without health coverage for 2 yrs..of course..if you are able to cay for COBRA, you can..
If your NS thinks a decompression is in your best interest..I would tell him point blank that time is of the essence..you now have fantastic insurance for which I am sure your doctor LOVES...and if you wait..you will have no insurance ..unless you can afford COBRA.
Before your appeal I suggest you go to where you had all your MRI's done and get copies of both written reports as well as the disks of all MRI's.
I hope I made sense and didn't confuse you more...and by the way, Michael, you never ramble!!!
@Susan he loads the CD and has some images on the screen but he does not refer to them. I think it is all for show cause he looks at the images and reads the reports prior to entering the room. I think I just want him to make a decision and not say it is not that bad your CM is so small when we all know that size doesn't matter it is the flow which is blocked. The lawyer doesn't want to get into it saying it is a medical decision. I like the idea though of a fresh scar/recovery. If I was to get it scheduled after the 4th I think it would work nice. Lets see what he says after the appointment.
The peace at heart I think is what bothers me the most cause I look at it like this: If I was a single man I would do the surgery without any second thought or consideration. Now being a family man with two kids and another one the way, I think I might over analyze every decision cause what I do effects my family. I can't stand to see them suffer, like a current dilemma which gets me frequently is my oldest knew and active and playful DAD and is wondering where he went and doesn't fully understand what is happening. Our youngest, Emma, has never known a playful or active DAD and wants to do so much with me and I can't. I want to make my kids happy and my wife happy, when they are happy I am happy. So when I know I have peace in my heart I will share it with my family so they get peace too since they have been so much with me. That peace is elusive right now and hopefully after a moderate recovery the peace will come and I can be normal again or experience what normal is really like. I just want to be the old me.
@Lori
You are too kind, I ramble and am incoherent at time but thank you for letting me know this is not one of them. He is leaning towards the decompression but with the fusion he was like that should clear up some of your problems and it really didn't. I think it made many of them worse and picked up a few new ones like gagging and difficulty swallowing. The numbness is still there like many of the other symptoms and the ones I experienced intermittently still can't tell cause they weren't frequent enough. The lawyers are optimistic on the Medicare though cause of going through the appeal process they are requesting that the medicare wait time be coordinated with the initial application time which would be November of this year and hopefully my LTD from work will continue my benefits until November ( that would be so nice). As many of us have experienced COBRA is usually too rich for all of us who have to work and not making that wonderful CEO pay for not doing much.
The lung doctor I meet on the 15th of this month and I know they are planning a pulmonary function test, already had 2 of these and I hate them. and then we go from there. The only other test that I know of they told me in the hospital that I will need another CAT scan due to glass like opacity in my lungs (doesn't sound good to me) and another chest x-ray (guessing to see that the pneumonia doesn't spread since it didn't show on the first ER x-ray).
I always get the reports since I am fighting with MET life Disability on and off regarding the MERITS of me receiving disability.
Lori you never confuse me, most of the time you are the lighthouse in my mind foggy waters.
let me start by saying thank you for sharing with me about your dad. Believe it or not that really means a lot to me. I wish I knew if my kids saw me that way - way to young to worry about them remembering me but they are kids. When I was in with the pneumonia, Katrina (oldest) was so worked up cause she thought I was going to die in the hospital and nobody would tell her. That broke my heart into millions of pieces. No amount of reassuring her was working until I finally came home. Emma (youngest) on the other hand, just wanted to know when I was coming home so we could play on the Wii and go tot he beach (the state park that has a couple of beaches off the lake). Emma also wanted to control my TV while in the hospital room. So I have seen the great divide in how my girls react to my Chiari (the thing that &^$FR*IUTY&* [translation not available at this time] our lives) and other illnesses that I experience. I lost my chain of thought and can't get it back so moving on.....
Thank you (and the others) for seeing in me what I do not see in myself. I do not see myself as the dad who puts his family first. I see and feel that I am the person who hinders his family with his limitations and inability to do things. I see as not selfish or anything like that but (hard to describe)like being useless or a burden. I still see myself in the past and having difficulty accepting who I am and what restrictions I have now. I see myself as the young man who jump out of airplanes with the USMC, rock climbed, played sports, hunting and fishing, hiking just activity even teaching Katrina to ride her bike (which at almost 9 she still has yet to master balance). IT seems like so long ago and so far away. I still haven't found the new pathways or adapted to the new plans yet, maybe it is because I want to at times stay in this valley of what I was instead of discovering the "new" me. Actually I am very afraid of discovering the "new"me and the new paths.
As for money, yes, all of us worry about it, even those who have more than we do. Like many people though, we teach the girls that there are things more powerful than money and that are better like family, love, faith, time together as a family just goofing off.
I don't know where my thoughs have gone now, oh well, time for bed, Emma wants to snuggle in my bed. May peace be with you and may your days be painfree.
Susan..thank you for sharing about your dad and your feelings with us.
Mike, I , to this day have days when that feeling comes over me..like I am a downer as a mom...like my kids resent me that I am always in some kind of pain...ect....
But I have to make sure I keep those thoughts in check because if not I will really be a mess emotionally. Feelings are not facts, I must keep telling myself when I doubt my worth as both mother and wife.
Your family is lucky to have you Michael....I think I have gotten to know you pretty well and I pride myself on my good judgement of people..don't ever doubt your worth.
I think you sound like a great dad! Even if you aren't as active as some dads they will still have great memories with you! Like of snuggling! My dad doesn't have any physical limitations but him and my mom both worked full time so we didn't do a lot of active stuff. So even amongst the rare trips to amusement parks and things the memories that stand out most are simple things like sitting in his recliner watching TV with him in the evenings, him helping me with homework, and tucking me in at night.
Thanks. DO you have any problems with food. I notice sometime after I eat CHinese , Mexican, or salsa my POTS really gets active and rambunctious.
Abby said:
Michael, Your in my prayers. Take special care of your lung issue. We chiarians/poties have a lot of issues. Pineapple juice helps with the mucus issues. Good luck with getting approval. Abby
I am new to the adding to discussions on this board, but I have been lurking for a while. First, if you are not in complete agreement with your NS, I would see someone else. Go with your gut feeling.
Second, when you go to your hearing, just listen to your lawyer and try not to be nervous. (I'm a lawyer). Answer the questions that you are asked and no more. Good Luck with the hearing and I hope it works out. Medicare/Medicaid is usually just fine, but depending on the area you live in, you may be more limited in the doctors who take it.
Finally, I think you sound like a really good dad, too. I agree with the previous posters about it being the little things in life that you remember about your parents, like silly little games or routines before bed, rocking in a rocking chair and cuddling or reading a book. Coloring together, building blocks, even playing dolls ! lol
If you have any issues with your lungs and have had pneumonia that frequent.. my guess is, your immune system will be too week for them to even think of doing ANY surgery for you for quite awhile.. any health condition that lowers your immune system will make the Dr's put surgery off ... so working on building that up might take a priority and watch your white blood cell count..
with my SSDI insurance coverage.. its not too bad.. i'm sure it also depends on the state that you live in also, Medicare pays the 90 % and the medicaid will payout somewhat the rest,...
I had an advocate that helped to get my SSDI going for me.. to get mine pushed through, what helped , was a letter from my surgeon. SSDI denied me at first and my surgeon was PO'd so he dictated a personal letter about the facts regarding my health condition and that pushed the whole thing through within a matter of one month... I know all cases are different.. but if you have any specialists that know your case and are willing to vouch for you like that... it would be of your best interest... make sure they are SPECIALISTS that have treated you for anything with your case/health issue for awhile...you can always request copies of any and all of your MRI'S.. CT'S .. ect.. and send them to your attorney.. thats what I did.. I keep a copy of All my health records to do with my chiari (never know when you will need them)